Friday, February 29, 2008

On February 28th I caught a National Public Radio show, “World Have Your Say,” a call-in show produced by the BBC. The topic was “Does your society gives you an idyllic version of what motherhood will be and if that is the case, is there a taboo about women speaking out honestly about the downside of being a parent?" The show was a follow-up to a Women’s Hour radio show on BBC that morning that elicited literally thousands of calls and e-mails that “opened a Pandora’s box of maternal ambivalence.” These moms admitted that although they love their children their often find mothering boring, exhausting and lonely but find that speaking out about their reservations was “not done.”

The show featured a panel of women from various parts of the world who talked about their motherhood challenges, and the importance of family and friendship support networks to find relief from non-stop parenting. Moms and dads called in from around the world to say that parenting is more isolating and difficult than they imagined, but they were reluctant to admit that to others. Two bloggers from the United States were also called and they gave some great examples of the pressures women in the United States feel to comply with “perfect mother” expectations. One mom gave the example of the attachment parenting movement and how it creates onerous expectations for mothers – to carry their children constantly and to shun the use of lifesavers [in my mind anyway] such as strollers and cribs.

Let’s say that Mothers of special needs children constitute their own country. If the BBC gent called me as a spokeswoman I certainly would have boatloads to say!! I think that parents of children with disabilities are expected to be saints of sorts. We may be a bit more off the hook for raising academic or sports superstars, but we have share the expectation that we should always but our children first.

I think we also feel unique pressure, especially when our children are young, to involve our children in a whirlwind of therapies and interventions. We don’t’ often even get the luxury of complaining that our children are watching too much TV or are on the computer too much. Instead they are being shuttled to therapies or engaged in play therapy at home.

Expectations in our “special needs country” are also different because society posits that we – as mothers or fathers - must be special since we are parenting such special children. I have heard more than once that Sayer was meant to be my child because I am so well-equipped to be his mother. Well, I always appreciate positive feed-back on my parenting but Jeez, that does create a bit of pressure, don'tcha think? ”

We all have our rough days and our rough moments and it is helpful to admit this and talk about these times to others. We should not feel we must hide any evidence that we fall short of society’s ideals of special needs mothering.

To listen to the Podcast (audio copy) of the World Have Your Say Show click on this link: Listen to the Interview Be patient with the link -- it takes a few minutes to connect to the Podcast.

Tuesday, February 26, 2008

A few days ago I had a conversation about this blog with two friends. It went like this:

Friend A:"I love your blog. I wished I could go to a film festival."

Friend B:"Me, too, I really enjoy reading it."

Me:"Then I wish you would both leave me comments on the blog."

Friends A & B:"But, we don't know how to leave a comment and we're embarrassed to admit it. Please show us how."

So, here is my Blog Comment Primer:

At the end of each post there is a section with the time of the post and the number of comments (0, 3, 63 – I can dream). The comment number is a link. Just click on the link and you will see a box for writing a comment. Write your comment there.

The next step is to choose an identity. A simple way to do this is to click the “Name/URL” choice and you will see a box asking you to enter your name and your URL (e-mail address, web site/blog address, and so on). You can write your name – just first name, full name, or a pseudonym. You can include your e-mail address but it is not required. Or, you can check the anonymous button and comment anonymously.

Your following step is either to click “Preview” to review your comment, or click “Publish your comment” and voila, your comment will become a part of my blog, along with the time published. Note that readers will have to click on the comment section to read the comment(s).

For example, for my February 15th post, “ASD documentary in the making ‘and I helped, ‘” there are two comments. At the bottom of the post,click on “2 comments” and you will be able to read the comments . You could read them first and then post your own comment/response. Now you are ready to enter the Blogosphere - and please do – it can get lonely.

My Favorite Books

On the subject of the Blogosphere, I have started listing my favorite midlife and special needs mothering books in the sidebar (right side). Each listing has the start of a comment I wrote. Just “hover” your mouse over the comments and you can read all of it. If you have any suggestions for books to add, please ---leave me a comment!

Tuesday, February 19, 2008

This week-end I was lucky enough to see some films at the Portland International Film Festival, sponsored by the Northwest Film Center. Audience members were asked to fill out a form with programming suggestions, and I suggested that they sponsor a “Disability Film Festival.” I would love to go to a film festival that had films that were about or by persons with disabilities, a festival with a tone that is more “empower and inform” than “let’s put on a pity party.”

Here are just a few documentary films I think would be a good fit for such a festival. Full disclosure: I haven’t seen any of the documentaries but have put those that are available on my Nexflix cue:

Hear and Now, a film by a Portland filmmaker, Irene Taylor Brodsky, about her deaf parents and their decision, after not hearing for 65 years to undergo cochlear implant surgery. You can hear an interview with Irene to learn more.

Praying With Lior, adocumentary about Lior, a boy with Down Syndrome, who prepares for his bar mitzvah in Philadelphia.

Murderball, a documentary about the competitive, rough and tumble world of quadriplegic rugby teams.

39 Pounds of Love: From this film’s web site - “39 Pounds of Love is the inspirational and humorous non-fiction account of a remarkable man and a remarkable journey. Ami Ankilewitz was diagnosed with an extremely rare and often fatal form of SMA/2 that severely limits his physical growth and movement, yet at 34 years of age, he continues to outlive a doctor's prediction of life expectancy by 28 years. And counting.” Ami works in Israel as a 3D animator.

These are just a few of the possible entries for my dream Disability Festival. I think such a festival should also include some comedies and dramas, such as Benny and Joon, Mozart and the Whale, Coming Home, What’s Eating Gilbert Grape – there are hundreds, maybe thousands to choose from. Disability Films is a British web site lists over 2,500 films that involve persons with disabilities. The site is organized by type of disability and has not only lists of major and minor films for each category, but additional links. The site also features a great list of books and articles on disability and film.

Are there any films that you think would be a good fit for a Disability Film festival? Comments and suggestions welcome!

Wednesday, February 13, 2008

Ah, Valentine’s Day time again. Only this year, we had two days notice to write 22 valentines - not a bit deal for "regular 'ole" kids maybe, but for kids with disabilities that make writing difficult, it can be a BIG deal. In years past, Sayer would dread this task and he would wear out after four or five cards at a time. We needed A LOT of advance time.

This year, Sayer was able to write the names of all his class mates and his own name in short order (with the help of a promise to Burgerville). Luckily, I found Valentine cards that had ample space to write both the name of the sender and the receiver. In past years, the spaces were so small writing was next to impossible (one year I simply typed and pasted all the class mate names).

But full disclosure – Valentine card writing was a major "hand-over-hand" activity. I held the pen with Sayer - well, I did the bulk of writing to tell the truth. However, I did make sure that it had that "Sayer" look - deliberately a bit sloppy, like designer jeans with ripped knees. And Sayer did help with spelling.

I spoke with another mom, who wishes to remain anonymous, who confessed that due to time constraints she wrote her child's Valentines, and was also careful to make sure they looked like her child had done it. This reminds me of the beginning of the book I Don't Know How She Does It: The Life of Kate Reddy, Working Mother. This novel is about an executive woman in England who is trying valiantly to balance a demanding job with being a mother. In the opening scene, she “roughed up” and smeared the frosting on a store bought cake for a school function. She was determined that her cake would have the "I baked this at home myself" look, and if that required baked goods trickery, so be it.

Similarly, I think that we mothers of children with special needs sometimes have to do our own fakery just to get by. At times, the expectations of what we can accomplish are too high, given the extra vigilance required to guide our children through activities others take for granted.If anyone had any "fakin' it" secrets to share, I'd love to hear them. They may not be as bizarre or cynical as the confessions on dailyconfessions.com (l love the one about the "vegetarian" who eats burgers") but we can try!

Friday, February 8, 2008

It’s the end of a long and busy week, made longer by long mornings with Sayer. I am not a night owl by nature, but I do prefer to wake up via a curve of consciousness that gradually moves from semi-comatose to ready for action. In contrast, Sayer seems to have two switches, ON and OFF, and after (gratefully) a full night’s sleep he is ON in spades. As a result, even though I am usually in bed by 10:00 pm or so, I struggle each school morning to keep up with his temperament.

Sayer’s cue to get dressed each morning is when Jacob leaves for his high school bus at 6:55 [Yes, we DO feel his pain, poor guy!!]. Then Sayer is raring to go downstairs, have his bagel with cream cheese and then---well, pretty much to keep vigil on the street lights that surround our house. I get a play-by-play of which ones are off, which ones are still on. At the same time, I boil water for our French press coffee maker and anticipate the moment when the coffee – nectar of the gods – will reach my bloodstream. And don’t cross my path if we have run out of ½ and ½!!

In the bad timing department, Sayer is very difficult to engage in the morning, before school, while I am full of morning-foggies and lack the ability to channel him into much focused activity. This is exacerbated by the fact that we won’t let him play Wii bowling before school; we’re not keen on video games before school. Once my coffee kicks in, we sometimes do some jumping and singing on the mini-trampoline; a good sensory input activity.

Today I googled “How to become a morning person” but skipped any links that mentioned cutting back on caffeine (there were quite a few of those, unfortunately). I did find this article from the Seattle Times, How to rise and shine when you’re nocturnal by nature useful, but I was disappointed to read this cold truth about Dr. Michael Smolensky, co-author of The Body Clock Guide to Better Health: “While he says he can reset you body’s clock so you’ll get enough sleep and reliably wake up on time, he can’t turn you into Mary Sunshine.” If he can’t turn me into Mary Sunshine I may be doomed!

Here is a blog entry is written by a mom in Canada who writes a blog called The Balancing Act. She writes about being surrounded by morning children (and grown ups). She has to get up at 5:30, which makes 6:55 seem downright luxurious.

Tuesday, February 5, 2008

The Family Panel on Transition panel last Tuesday night featured a family who went through a Person-Centered-Planning process for (and with) their daughter. It also included this student's transition teacher. The person-centered-planning process featured the student and her family, the student's teacher and also persons involved in various aspects of the student's life, such as her church and swim team. One thing that really struck me about this process was that the person-centered plan became the backbone of the student's IEP. The teacher noted that rather than spending two hours at her computer writing an IEP, she joined family and community members in brainstorming a transition plan together.

Because the planning process was led by an outside facilitator (another special education staff member), the teacher was able to take off her "instructor" hat and join the others in thinking both in and outside the box. The teacher noted that while the Person-Centered-Planning process took some time, the plan that was developed ended up "driving" the student's IEP, which took relatively little time to develop.

In the "good timing department,the Multnomah Parent Action Committee, a member organization of the Family Action Coalition Team (FACT), is sponsoring "Creating a Plan for Your Child: A Person Centered Planning Workshop" in Gresham on March 8th. The Events link of FACT's web site lists details for the workshop. Please note that the workshop is free but registration is required and space is limited. The Multnomah Parent Action Committee is also sponsoring the same workshop in Portland later this month, but that event is already full. If you'd like to go to the one in Gresham you may want to register sooner rather than later.

About Me

I am the mother of two sons, one on the autism spectrum.My musings at times . reflect my educational background in sociology and social work and work as a public policy researcher and grant writer. At other times my musings contradict my prior convictions - ah, the perks of life experience. I live near Portland, Oregon.